Wednesday, January 30, 2013

I know - I know - it's been way too long. I have been 'not so silently' scolding myself for the last month now because I have failed to keep my promise of updating more regularly on just how great Camilla is doing. For future reference the mantra 'no news is good news' apparently fits concerning this blog :)

So as I sit here tonight, on my 35th birthday, reflecting over the past year I can't help but think how it has been, by far, one of the most difficult of my life. As I pause to remember just how difficult, my mind is immediately overtaken by the memories that make this past year, by far, the most blessed of my life as well. Difficult because Camilla underwent her 3rd and 4th MAJOR brain surgeries and all of the worry, anxiety, stress, fear and sadness that you might imagine would go along with such events and blessed because she remains seizure-free (10 months and counting) and we continue to feel the love and grace of wonderful friends and family, a supportive community and above all God who has poured out His peace and comfort in abundance over the last 12 months. As I looked in the mirror tonight I couldn't help but notice that the reflection has changed drastically over the last several years. In fact, I'm pretty sure the last 7 years have aged me about 15 more than I'm rightly due. Instead of the word wrinkles I think I'll use the term 'battle scars'. Oh well, either way it's much easier to deal with since Camilla is doing so well now.

And she really is doing well. 4 days ago we passed the 10 month mark of being seizure-free. Whew - what an accomplishment for her and what a relief. We are busy planning her 1 year seizure-free celebration - Walt Disney World here we come! We will be going in February (a little early we know but we're optomistic) and I can't wait to share how much Camilla enjoys herself on this trip. We are also celebrating many accomplishments as far as development is concerned. She is adding new words almost daily (still single - mostly labeling or request words - no conversation just yet) and in the last few months we have heard 'Dada' and 'Mama' almost daily :) She has learned a few new signs and is much more consistent and appropriate with the words from both her mouth and hands. There have been many 'aha' moments concerning very small aspects of her development - most too small to recount here but when put together display a child who is 'awakening' and on the path to learning and progress. We continue to take 'one day at a time' and are trying to be faithful and thankful in the small things. Prayers appreciated for continued development and many more days without seizures.

I hope to update soon with pictures from the last several months...thanks for checking on us...until we meet again....

"For I know the plans I have for you," declares the Lord "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.